Hairy cell leukaemia

FormerMember
FormerMember
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Hi

I was diagnosed with HCL on 6 June 2006. Yes 6th of the 6th of the 6th. ironic eh?

I would really like to meet anyone who has Hairy cell leukaemia (HCL too).

Anyone out there?
  • FormerMember
    FormerMember in reply to FormerMember

    Thanks for the funnies, Frank.

    Here's one for you. Remember the old adage "Red sky at night..."? The new one is " Chem trails on a sunny evening...rain for three days!"

    Dianne, I find it ironic that African countries who broke away from the tyranny of the West have ended up with even worse black tyrants. But your sad story reminded me of a joke.

    A Liverpool football talent scout goes to Afghanistan on a tip-off. He sees a young man playing football in the street who is brilliant. He signs up Ahmed and takes him back to Liverpool. He's so good during training he's picked for the first team on Saturday. Excited he phones his mother.  "Mum, I've been picked for the first team!"   She answers sarcastically, "Oh how wonderful. Well, what about us? Your father was shot yesterday in crossfire between two drug dealers. Your sister was sexually molested by some drunken soldiers. And your brother was mugged for his phone. And it's all your fault!"

    "How is it my fault?" asks Ahmed. His mother snaps "Well, you wanted us to come and live here in Liverpool!" 

    I'm up the hospital tomorrow to see the haemotologist.

  • FormerMember
    FormerMember in reply to FormerMember

    hello all

    hope everyone is doing well and welcome to the new comers! hope your apt went well yorik? ive not heard if Frank's election has been contested, so guessing our leader is in situ!

    Claire, hope post hospital youre okay too. its great to have so many people on the thread, but sad at the same time as i dont want anyone in this position!

    i had my groshong line put in yesterday, after 5, never again - but i do say that everytime. im on chemo unit now waiting for a line check and flush. they are chocca so it'll be a while. i'm kinda on my own, but you lot are here. everyone else has a side kick. my hubby will be with me for the chemo and rituximab but he needs to work sometime so we can pay the bills!

    hope everyone's bloods are on the up, as we all seemed to be on a downward trend. come on all, lets see your neuts up - oo err missus!

    take care all

    wx

  • FormerMember
    FormerMember in reply to FormerMember

    Hello everyone I'm back and hoping that the MacM techies will sort out why my messaging won't accept paragraph spacing - gremlins in the system?!!!!!!!!!!!!! Well, I have been reading all your messages but was feeling somewhat down due to one thing and another not to mention why you have to read my messages as one bulk. Anyhow- that's life although not as in Dianne's part of the world!! I'll be grateful for small murphies - he he!! lol!!! We were due to go to Wales for a week but about an hour before leaving "himself" as in husband decided to announce he wasn't going. Yes - I was furious to say the least!! Not only that, we were due to stay at a friends house and they were preparing a meal for us in the evening - embarrassed or what?! Anyway, that hurdle over with and he insisted that we kept our hotel booking in Evesham for Saturday night. Yes - we had a lovely meal and a swim beforehand - it is a hotel we've been to several times before. As we were home last week - we went to one of our local garden centres and somehow my pen & pencil set (gold) which I've had for about 40 years must have fallen out of my bag and nobody handed it in - did I really expect someone to be that honest these days?! Well I did hope as it has been like losing an old friend. I've also been trying to cope with a cold or virus - a really weird one though. I've tried getting stuck into the garden although not much done due to the rain!! Did my hanging baskets yesterday with plants from garden centre and put my spuds in - yes in bags and put a few little gem lettuce seeds in as well. It sounds as though the water bods may be lifting our hosepipe ban at the end of the month due to the amount of rain we've had. Now about FRANK and his nomination as PRESIDENT - Yes I vote for this one absolutely!!! Wendy - I agree it is a lonely business when you go for chemo but I was always on my own and took my radio with ear plugs and books. Unfortunately you couldn't have a nap as they were checking on you every few minutes but a bit of people watching was amusing sometimes. With regard to blood counts, I can't comment at the moment as I'm not due for a check until beginning December. I do hope that those of you having chemo, check ups or whatever will come out "on top" and soon really start feeling better. Take care and I'll bein touch soon. Oh yes - been too down to even go for a run which I have to do before the Race for Life cancer 5k mid July. Love and healing hugs to you all. Florence

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Wendy,

    I hadn't heard of a Groshong line before so I 'binged' it - I'm more familiar with a washing line. Luckily, I didn't need a semi-permanent line attached when I had my weekly chemo way back when, and if the docs came near me with a line I'd pass out on the spot, wouldn't need any anaesthetic!

    Best wishes for the treatment, hope it does the trick and you're soon back to normal and fighting fit.

    All seems ok with me, although bloods could be a bit better, then again, they could be a lot worse. Sleeping well lately - well, last night was helped by sharing a bottle and a half of wine with a friend, over a chicken korma - of course, I'd usually have a beer or lager with curry!

    Ah well, back to the French tennis from Paris on the TV - it's been rain rain rain all the way here today, so rather stuck inside - oh, there's scrabble on Facebook too, to keep me out of bother.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Florence,

    Ah husbands eh, what would you ladies do without them? Even when they exercise their veto over going to Wales... I've always said "Strange chaps, Men!" that's on the days when I didn't say "Strange chaps, Women!"  Glad you had a good time in Evesham, pity about losing your favourite pen & pencil set. There's still honest folk about though, the other week my niece lost her purse with about £60 in it on the bus....and a lad handed it in so she got it back.

    Yes, wet wet wet all over the place - typical British Summer bank holiday (is it summer yet? or was it that hot week we had in May?)

    You must be in pretty good nick - no checkup till December - and all that running too. Keep it up!

  • FormerMember
    FormerMember in reply to FormerMember

    I had a moan to the haemotologist yesterday. He said all my blood levels were satisfactory. Fine, I said, but I've still got the cold symptoms I've had for 18 months even though the ENT man said I had no infection. I still wake up in the night with pain in my shoulder and hip on the side I'm laying on. They think that's arthritis so nothing they can do. AND I've still got gastritis which means I don't eat much. But they don't know the cause so I'm stuck with it. So I'll have to continue my search of the internet for a home remedy cure. If the specialists can't help, is there any point going to the GP?

    Thankyoui for tolerating all my moans. Now here's an old joke.

    Grandma O'Reilly passed away and was buried in a corner plot with a large gravestone. A couple of days later there was so much rain, the gravestone started to tilt over. So the groundsman tied some wire round it and tied the other end to a nearby telegraph pole. A few days later the family came to pay their respects. The daughter-in-law saw the wire, turned to her dhildren and said "Begorrah, will you look at that, now. Grandma's only been buried a week and she's had the phone put in!"   

  • FormerMember
    FormerMember in reply to FormerMember

    Hey Yorick

    Moan away, we all do sometimes need to - just then to keep going. Its bound to be frustrating that you cannot get to the bottom of your issues. But as ever you always bounce back with a joke!

    I hope you can find something to help, if not a diagnosis or cure – perhaps some relief. I have to recommend the mindfulness thing, its really working for me. Facing what is it (with kindness!) and accepting it (i.e. pain, discomfort, worries or whatever) and feeling it for what it is has been very helpful. I've started to look at some of my ailments a little differently. Maybe it could work for you?

    It's just been my HCL diagnosis 6 year anniversary. I was diagnosed on 06/06/06! We've almost 500 posts since I started this thread and when I think back how we've all been and what we've all faced it makes me proud to have reached out. I hope its helped newbies as they have come along. I know lots of you have been of immense help to me over the years.

    My line is in and Cladribine starts Monday. Had a good chat with the sister about Rituximab and feel much better. Also asked about the doctor strike (or whatever they are calling it) on 21st and my chemo unit will not be closing and docs will be on hand. Its a relief as this is my day 1 for the Ritux and I understand the most critical one.

    I'm off to get my hair cropped as last time it thinned a lot with Cladribine. My hairdresser will be chuffed, he is scissor mad!

    Have a lovely weekend all - keep those hairies at bay.  

    ttfn Wx

  • FormerMember
    FormerMember in reply to FormerMember

    ooooh - can I be number 500????

  • FormerMember
    FormerMember in reply to FormerMember

    Hi folks - just testing the system as I think MacM techies asked me to see if I can do paragraphs. Sadly I does not so will have to let them know. Keep dry - it's been raining since yesterday and forecast is they don't know when it's going to stop!!! Florence